Interstitial pulmonary fibrosis

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My spouse has IPF and currently is provided portable oxygen and a concentrator with Inogen. We are very worried about power failures and have made numerous efforts to obtain oxygen canisters as back up for power outages. To no avail! We are always told that as long as we have Inogen he doesn’t qualify. All of the others in his pulmonary rehab have emergency canisters provided by their provider of concentrator. It is a frustrating situation. Two pulmonologists have tried to assist us and oxygen companies with canisters refuse even if we pay as long as we have Inogen. Last week I was told that by law the concentrator provider must provide emergency canisters. We live rurally and often encounter outages. I have notified power company but they can’t promise priority. Inogen said “call 911; go to ER; use your phone charger.” All impractical long term solutions.
At level 5 Inogen batteries last little over and hour and we only have two.
Who knows the ropes on this situation? Surely we are not the only ones in this situation.
I have considered a portable generator as back up as all other efforts seem to fail. I am very frustrated.
I have tried to reach the American Association of Oxygen Providers and number not in service! One more frustration.
One company told me there is a law that concentrator provider must provide emergency coverage.
Anyone know of this law?

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@totty My wife has PF .....and we have all three oxygen sources. There was never any resistance by our supplier to give us what we asked for.....they were extremely cooperative.
Are you going thru Medicare on the billings? Or private insurance, or paying out of pocket?
It seems to me that this supplier of yours is making up it's own rules. There's no reason for them to deny you the canisters, as long as your doctor prescribed. and they get paid, one way or an other. It just doesn't make sense.
Perhaps try speaking to someone higher in authority at your supplier. It could be that whomever is telling you this....is misinterpreting the rules. Is there another supplier available to you?
Finally, consider reaching out to the Pulmonary Fibrosis Foundation, for help. (PFF Help Center (844) 825-5733) or http://www.pulmonaryfibrosis.org .....they have some outstanding resources to help you.

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Yes, by law vendors who provide oxygen need to provide refilled tanks, i believe these called e-tanks.

Ionogen is not covered by insurance, you paid out of pocket. Once primary or pulm md writes prescription for o2, vendor who supplies who supplies would send concentrator with easy fill system and etanks to fill. By law they also need to provide metal stand for e-tanks in case of earthquake as tanks need to be stored in upright position.
If you have medicare, go through ther patient phone line.

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This is a new question.
My spouse has IPF and currently is provided portable oxygen and a concentrator with Inogen. We are very worried about power failures and have made numerous efforts to obtain oxygen canisters as back up for power outages. To no avail! We are always told that as long as we have Inogen he doesn’t qualify. All of the others in his pulmonary rehab have emergency canisters provided by their provider of concentrator. It is a frustrating situation. Two pulmonologists have tried to assist us and oxygen companies with canisters refuse even if we pay as long as we have Inogen. Last week I was told that by law the concentrator provider must provide emergency canisters. We live rurally and often encounter outages. I have notified power company but they can’t promise priority. Inogen said “call 911; go to ER; use your phone charger.” All impractical long term solutions.
At level 5 Inogen batteries last little over and hour and we only have two.
Who knows the ropes on this situation? Surely we are not the only ones in this situation.
I have considered a portable generator as back up as all other efforts seem to fail. I am very frustrated.
I have tried to reach the American Association of Oxygen Providers and number not in service! One more frustration.
One company told me there is a law that concentrator provider must provide emergency coverage.
Anyone know of this law?

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Hi y’all and thank you for all the support and information…

My husband is almost 76, non smoker ( ever), non drinker, walks the doggie on trails between 1.5-2 miles every morning and when weather is not so hot, 1 mile evening as well. Plays golf 3 days a week. Not overweight and I try to feed him/us very healthy meals.

Such a shock…I researched trials and after finding lots of info about that idea, as well as availability and location issues, decided that taking such a huge chance to get the good pill wasn’t worth it

We have a good pulmonologist; he asked for her opinion; she recommended Ofev, between the two approved ipf meds…more money, but less potential side effects than the other one I can’t remember the name of…

Ofev has been around for about 8 years…no cure, just potential slowing. Good information support system. Of course, there is no way to determine life expectancy; every one is different.

Was tough to convince him to take it, price, yes, but nasty side effects
( bad diarrhea is very/most common).

I just went to a modified BRAT diet at start of medication-easier to add food than take away. So far, so good. Eating most things now and no problem.

Has had recent ct w/contrast and so far, no change. Second liver test was good. If he gets a third good monthly test, then move to every 3 months.

Primary care doc found it after
I “ forced “ him to go to doc for little dry cough. Good guy!

Took antibiotics and has cleared cough, and stayed clear. We are working hard on gerd, which we both have. That can be a trigger.

We both continue to research; he makes me a little (lot?) crazy that he thinks zink and some other things mixed together will heal lungs. Mouse Petri dish study…

Discussed that with doctor and she already knew of the study, and said he needs a year on the meds to see what is or is not happening without interference from other chemicals.

So hard, because he feels fine, but now this thing is shadowing our every day. Try to feel grateful that he feels well, no pain and is active.

For those that have followed me a bit, and new posters, thank you-I think it is very helpful to be able to share and vent on sone level, to people who understand…

❤️❤️❤️

Ps so sorry this medication was not available sooner for your family…

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How are his lung function tests (PFTs)? Hopefully he is seeing his pulmonologist every 3-4 months and taking the PFTs ar every visit. Mine have been normal for more than a year; if they are still normal next month at my appointment, I believe my doctor will completely wean me off of Cellcept. I feel like I dodged a bullet, but I do think we caught my ILD early (in August 2020). Good luck and God speed.

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Hi there,
He has only been on the Ofev for about 4-5 months, and has had only 1 pft test, which she said was good. Probably next one at 6 months.
Did not ask if any change…
Seeing her every 3 months, and have had 2 good liver function tests, one due now. If good, then we switch to every 3 months. Will see her next month, I think.
Newbies at this, but all have said we caught it early. Cross your fingers that he doesn’t get anything else to drop him down.
I am sooooo happy that you are doing well and will be weaning off the Cellcept soon. Did you have a transplant? I looked it up after one of your earlier posts and found that it is an antirejection Med. If I remember correctly. Or did they just give you that as the basic treatment? My husband is still very active, dog walking and golfing, just seems a little more tired sometimes. Not sure if just southern summer heat, age or illness.
If he could stay at this level, or close, piece of cake.
We are also seeing a functional medicine practice, blood work, etc, and just found some interesting toxicity in his body that we are going to talk about the ways to detox his system. Weird stuff, but when we looked it up, can really affect lungs. Antimony. Lead. Arsenic. Never heard of it…I guess more to cone! Now is he willing to do the treatments to remove…
I wish you so well and let me know what you had done, etc…
❤️

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